Today, I go into battle. Excuse me while I suit up…and the somewhat serious nature of this post…
Since deciding that an Insulin Pump would be the best option for me, I seem to have had nothing but trouble from ;
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Hi Sam
Keep going…. you will know already that a good Hba1c is not the be all and end all. The NICE guidelines tell you that “frequent episodes” of hypo’s especially with a lack of hypo awareness means you fall into the NICE guidelines category. God the whole thing makes me cross.
I am lucky enough to have been put on my new pump on NYE, I am thrilled with it. I had disabling hypo’s at night, I am still too scared to sleep through without getting up to check levels. The pump (I was on a loan one since march) has dramatically improved hypo awareness. Also a good hba1c coupled with hypos does not equal good control. What was it out of interest? If your hba1c is too good, this may just be because of your hypo’s? Not good control?
Good Luck. The best person (I know Tim and Alison are great, but in my battle I got some FAB advice from INPUT, they were great.) Coupled with my Law degree and a propensity for being a bit aggressive when needed, I got there in the end. I am now happily pumping! Good Luck!
It’s the debilitating hypos thing that you want to major on. The fear of hypos are effecting your job, your homelife and you’re worried about large swings in BG. In fact it’s so much of a worry you’re putting off starting a family (possibly).
Perhaps ask if you can borrow a CGMS to demonstrate your swings?
That NICE guidance in full: http://guidance.nice.org.uk/TA151
@Clarey
Firstly, well done on getting your pump! It sounds as if its doing wonders!
It’s funny, but my team have refused to listen to me when I’ve said that my HbA1C (6.5%) is because of my hypos. My control itself is far from brilliant, it’s one hell of a struggle. My nurse asked me today if I had read the NICE guidelines, and funnily enough I have!, hence why I know that hba1c isn’t the be all and end all. I’m very cross myself that this has been said!
I’ve just emailed INPUT so hopefully that will help. And if I have to then I will go further, to my MP and beyond if I have to because obviously my team has no idea what the guidelines for obtaining a pump actually are.
Thank you so much, it seems as if many other out there have had to fight for what they want!
@Tim
cheers tim! I did indeed mention the F word to the specialist and my worry due to BGs. It fell on deaf ears :S. Again, work was affected too (archaeology and hypos don’t mix very well, its not the best of lifestyles in which you want to be injecting!). And you’re right, homelife is affected, but again it fell on deaf ears. The amount of times my other half has had to bring me round from a nasty hypo and then deal with the huge BG swings later on…
hmmmm conundrum
The CGMS sounds like a plan actually. Nursey mentioned something today about that, but to start in march…urgh…I’ll probably have moved away by then…
It’s over eight years since my own pump funding experience, but every time I hear about an experience like yours, I still get angry!
Unfortunately the NHS doesn’t put much importance on quality of life alone. But the good news – disabling hypoglycaemia is a principal indication for pump funding in England and Wales. The NICE Guidance isn’t exactly an exciting bedtime read (more a cure for insomnia) but it will gve you all the facts if you haven’s already read it. See http://guidance.nice.org.uk/TA151/Guidance/pdf/English (Not sure if HTML is allowed here, but if not just copy/paste the link)
If your current consultant isn’t cutting it, then your best option may be to go somewhere else that is a bit more pro-pump. Given that you’re in Southampton, Bournemouth might be a good bet. Definitely try contacting the guys at Input too, if you haven’t already. See http://www.input.me.uk/
Most of all, good luck and don’t give up!
@Caro
A couple of people beat me to it on the links there!
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Just one other point, sure INPUT will say this, but you can chose to go to a pump friendly clinic? My clinic is FANTASTIC, I travel there but my local services are really bad and not pump friendly, a huge amount depends on the consultant.
I was also told that they wouldn’t take the psychological elements into account, and that you just had to be hypo hypo hypo hypo and hypo awareness. However, most of what people tell you is totally contradicted elsewhere! So just go for it and I wish you lots of luck!
I hope that the next hard thing is choosing what pump you want, now that is hard… 😉
Oh and re CGMS – def worth doing and there’s no point getting up to monitor sugars etc as it won’t be an accurate reflection of what’s going on o use that as an arguement for CGMS to get a pump etc.
I would recommend picking a good clinic though…. a pump friendly one if you can handle the travel
Hi Samantha
Sadly your story is all too common.
Your battle is likely to be shortest if you go to a clinic that properly understands pump therapy. Your GP can refer you.
HbA1c is not the only factor. Have a look at http://www.input.me.uk where there is a link to the NICE technology appraisal and a list of pro-active pump clinics.
Good luck, and do get in touch if we can be of any help.
Lesley from INPUT
@Lesley
Thank you Lesley! I’ve had the INPUT website up most of the evening, poring over it! I’ll definitely be getting onto my GP about a pro active pump clinic (though I think we’re going to be moving soon so I’m not sure how to go about this yet). Thank you ever so much though, I have actually just sent an email your way! 🙂
@Lesley Thanks for your INPUT (ho,ho) Lesley!
Actually, for anyone else thinking about a pump then Lesley’s site at http://www.input.me.uk is a hugely good source of information and support – highly recommended reading.
The problem with the NICE guidelines is that they are ambiguously drafted – especially the newish bit about debilitating hypos. That particular section can be read in many different ways, so pump friendly clinic is probably the way forward.
However, even if the clinic is pump-friendly in principle there may be ongoing issues with funding and training waiting lists. Bah!
GO GET THEM!!!!
Sam – it took me a little while to get my pump. I had been complaining of drastically fluctuating levels for ages. I used to take in graphs looking like a mountain range to my reviews. I had a lot of night time hypos too, about 3 or 4 a week, which seriously affected by life.
They mentioned a pump to me, but I had to go on a second carb counting course and then have a CGMS for 3 days before they finally agreed that yes my control was all over the place, despite me trying everything to get it right. I am now on the waiting list for the pump (dont get me started on that one). Does you clinic have a CGMS you could have for a few days to prove to them that your levels bad?
My hba1c was 8.4 but I have now managed to get it down to 7.4 and I was worried that i would be taken off the pump list. They have told me though that this will not happen as I am still having lots of hypos and hypers and the lengths I am going to to obtain this level of control are not sustainable.
Keep on at them.
Rrrrragh!!!!
Just found this site and thought I’d join in… I’m lucky enough to have a pump now (6 weeks in!) and it’s going well so far. My HbA1C had been out of control for a while – 11% (arrgghh) as I wasn’t good at looking after myself. I was diagnosed 21 yrs ago, and as a difficult 14 yr old didn’t want to hear it, so never accepted it. Went to clinic yesterday and got gold stars all round for my new blood sugar results – yes, I’m even testing too! It’s early days, but so far, so good.. keep nagging them to give you a pump, it’s changed my life already.
@Charlie Glad to hear it’s working out for you Charlie. I’m on a waiting list for a pump and should get it sometime in 2032 (or something). Happy days!
Word on the street is Lothian is becoming complacent and feel they can relax now and wait for other health boards to catch up… not much hope of that! So keep at them Tim, don’t let them relax too much! We need everyone waiting for a pump in Lothian to let the NHS know they are not happy waiting 2+ years on a waiting list.